Wednesday, June 29, 2016

No Person Left Behind: How the Liberal Progressive Movement is Forgetting About the Disabled

The other day, a lady -- who identifies as a feminist -- and I conversed about income inequality. She advocates for women's rights, including the right to equal pay. When I agreed with her, she was satisfied, and was ready to drop the conversation. However, I could not contain my curiosity, so I asked her if she knew that people with disabilities are payed sub-minimum wage. See, many people do not know this, and no one -- with the exception of the disability community -- seems to care that it is happening. She expressed that she could not fathom that the government would allow that to happen, and that it must just happen in the private sector. I informed her that in encouraging businesses to hire people with disabilities, the federal government passed a law that allows employers to pay the disabled sub-minimum wage. I went on to explain that this piece of legislation was legitimized by the perception that people with disabilities do not work at the same quality or speed as the general population. She did not seem bothered by this information; she even said that the legitimization made sense. I questioned her on this; I asked her whether all people -- disabled or not -- should be payed based on their generalized ability. She did not have an answer, and the conversation ended there.

Why should the topic of disability -- or ablism -- be treated any differently than feminism, racism or sexism? The conversation I had (mentioned above), is not uncommon; it may be on a different topic, but the theme is still the same. It seems the mentality is as if everyone should have (or maybe even given) access to a happy and fulfilling life, except the disabled. 

This theme was woven tightly throughout the tapestry threads of Western Washington University. As a political science major, I read many textbooks on the topics of environmentalism, feminism, racism, and sexism; the topics of economic inequality and intersectionality would pop up time after time. However, the topics of disability and ablism would rarely bubble to the surface, unless I brought it up.

One of the times that disability made an appearance (prior to my assistance), was when my Economic Inequality professor addressed Social Security. This was during one class period, and was the only day she addressed disability, and she lumped all disabled and elderly people together. She talked about Social Security, but not Supplemental Security Income (SSI); she talked about Medicare, but not Medicaid; she did not inform the class of the savings limit placed upon any person who collects SSI, nor the income limit that people, who require assistance to live in their own homes, have to stay under in order to receive their allotted hours of assistance. She did not address the lack of affordable and accessible housing, nor the number of disabled people who are forced to live in institutions. She also did not share that both the likelihood of a disabled person living in poverty and the unemployment rate of people with disabilities is twice as high as that of the able-bodied population, nor that over eighty percent of the working aged population, who are also disabled, are not employed. This class did however cover the economic inequality, and the intersectionality of racism, sexism, and classism, with the addition of environmental consequences. Despite the disabled population being the largest minority in the United States, and that disability and poverty go hand and hand, the term ablism did not even come up in any of my professor's lessons.

There was also one mentioning of disability in the textbook for my Economic Inequality class. Thrown somewhere in the pages of this book was a statistic (on a scale of 10) stating that on average, a person in a room will rate their level of happiness two points higher when there is a person in a wheelchair in the same room, than when there is not. This means that people feel better about their life circumstances just because someone else is in a wheelchair; this rings pity, and reflects the notion that life with a disability is sad or more difficult than a "typical" life. A random person in a wheelchair -- just like any random person -- should not make anyone more or less happy based on their supposed circumstances. A person, who is in a wheelchair, should make people happy because their company is enjoyable, not simply because they are in a wheelchair; however, this takes getting to know them. The wheelchair should not be a factor in making people feel happier.

The curriculum of my Economic Inequality class did not stand alone. In my Cultural Studies Class, we had a text book that was filled with articles written by a diverse set of authors; there were over two-hundred articles written on race, gender, and class -- all pretty evenly distributed numbers wise -- and there were only three that fit within the theme of disability/ablism. I did however, have many opportunities to address this topic in my class. My professor greatly appreciated my input, and did acknowledged that the book was lacking in the area of disability.

A third time that disability arose in one of my classes, was in one of my Political Theory classes; this occurred when our class addressed the court case Buck v. Bell. This court case rules that Buck, the plaintiff, was allegedly retarded, and therefore, it was deemed appropriate for her sterilization. However, this time, I was given the opportunity to learn how a student felt about people with disabilities. This particular student voiced that he believed that the court was in the right; since this woman was disabled, she should not be able to procreate. His belief about disabled people was strengthened when our professor clarified that this woman was not actually disabled; he quickly changed his mind, stating that he was now in disagreement with the court, and that it was wrong for them to sterilize a woman as she should have a right to her own body. He pretty much was saying that a "normal" woman has the right to her body, but a disabled woman does not. Just the simple factor of disability swayed his mind. I was so mad; I felt like I was going to explode. This time I kept my mouth shut; I just sat their fuming. Today, I wish I had said something, but I did not want to open my mouth as I knew I would not have been able to keep my cool.

One more memory of disability being mentioned, was in my 20th Century German History class; my professor -- as well as some readings -- did include the disabled when listing which groups of people were considered lesser and killed by the Nazis; but that is just it, just mentioned.

These were the few times that the topic of disability came up in my numerous classes at WWU; however, this theme of there being a lack of disability awareness did not end with curriculum, it extended to the classes offered, and the mentality of the campus. Even though WWU offered classes on the study of this group and the history of that group, WWU does not offer disability studies courses. WWU does not offer American Sign Language (ASL) either; WWU does not consider ASL a foreign language. When there were events put on by the Disability Outreach Center, there were at most fifteen attendees, the majority whom had a disability.

The Disability Resources for Students (DRS) also reflected the attitude towards people with disabilities by making inappropriate comments like, "there are other students on campus who have worse problems than you," and not providing students with their accommodations until they are reported to the Office of Civil Rights (OCR). The president of WWU also made his feelings towards people with disabilities clear when he passed both my concerns and I off to one of his six vice presidents. This can be compared to a written threat toward a student of color, that President Shepard addressed promptly, and in which the community grew to know about.

Even though WWU, and Liberal academia and the media in general advocate profusely for allies to come along side all people groups, this theme of just leaving the disabled community to fend for themselves happens time and time again. Not many know about disability policy, or seem to care for that matter.

This is a different story, however,when the topic of euthanasia (AKA Death with Dignity) arises. There are many able-bodied allies that happily come along side the disabled who desire to end their life, but not along side those who desire to live their life. Maybe, just maybe, if the media would stop portraying disability as a terrible fate, and enlighten the world on what it is actually like to have a disability -- that we are just people living our lives -- and in turn, we and the topic of disability would no longer be a taboo subject.

People with disabilities are people, but until we are portrayed as people, our equal opportunities will continue to be denied, perpetuating the terrible image of disability. We will continue to be stuck in this conundrum of: until the world is universally accessible, disability will continue to be considered a horrific fate, but at the same time, until disability is considered just a part of life -- rather than a horrible reality -- accessibility will continue to not be deemed a prominent issue that is necessary to be fixed.

If the world knew that we are people and that our lives do matter, allies would be advocating for us to have an equal opportunity to live life rather than advocating for our right to off ourselves. And if the world began to educate themselves on what life with a disability is truly like, the world would slowly, but surely, become universally designed; the barriers to people with disabilities, along with the justification of their demise, would be eliminated.

Wednesday, June 22, 2016

9,462 Days: Why 60 More Will Perpetuate the Prevalent Lack of Access

There are a handful of bills in the works that -- if passed -- will, for people with disabilities, perpetuate the lack of access to public amenities and entities. These bills will require anyone who wants to file a legal complaint against an entity in violation of the Americans with Disabilities Act (ADA) to present the entity in question with a written statement specifying the exact violation sixty days prior to pursuing any legal action. This provides the entity in question with an opportunity to comply with -- or begin to comply with -- the ADA; if the entity shows progress towards complying with the ADA, then there is no longer any chance of pursing legal action against that said entity.

These bills were written with the intent of preventing unnecessary lawsuits that are pursued by lawyers simply to gain a profit. Sen. John Kavanagh, R-Fountain Hills, who sponsored the bill that has been introduced to the Arizona Senate, suggests that a hotel loosing money over not providing an accessible pool lift is not acceptable. However, it is documented that hotels are legally obligated to provide such amenities -- as an accessible pool lift -- as entities are required to provide equal access to all amenities provided to the public -- including hotel pools.

The ADA was passed on July 26, 1990; this document is law, and should be treated as such. It has been a part of legislation for over twenty-five years - a long enough period of time for entities to have become aware of this set of standards, and to comply with any that pertain to them. Entities have had a 9,462 day notice, so they should not need 60 more. I have encountered many entities that have ignored the ADA, and now there is this set of potential legislation that will allow entities to continue to be in violation of the ADA, but their violations will now be deemed acceptable with no legal consequences.

A perpetuation and validation of discrimination towards people with disabilities will not be the only problem that could occur if any of these bills are passed; a precedent will be set. Other bills could be passed to allow people or entities to require a 60 day notice stating the law in which they are violating prior to being prosecuted or sued.

Take speeding for example. Speeding is against the law. If a person is pulled over, it would not be considered reasonable for the person in question to request a 60 day notice informing them that they are in violation of the speed limit, and need to upgrade their driving tendencies in order to dodge a ticket. This would be ridiculous. The person already broke the law; they were speeding, so they should face the consequence, a ticket.

So, why should it be any different for an entity in violation of the ADA? The ADA is law, just like the speed limit. If an entity is in violation of the ADA, they are already breaking the law. They should not have a chance to right their wrong before being sued. This is not right.

A situation that may be a more relevant topic to compare to this bill is the recent passing of state legislation that either protects or prohibits businesses from denying services to the LGTBQ community based on their religious beliefs. In 2014, the Court of Colorado deemed the bakery, Masterpiece, in violation of a couple's civil rights when denying them access to services -- a wedding cake -- Masterpiece was told that they could continue displaying their beliefs, but they could not deny access to services to one person(s) that they provide to others. In the same year, Arizona's governor vetoed a bill that would have allowed businesses to deny services to anyone based on religious reasons. Though Arizona decided against this bill, they are still in consideration of passing the bill (stated above) that would allow entities to discriminate against people with disabilities by not providing them with equal services.

Arizona is not the only government with this type of bill. If passed in any state -- or at the Federal level -- these bills will make the ADA irrelevant, in turn pushing positive progress made toward a more accessible world, backwards.


Wednesday, June 15, 2016

Medical Supply Companies, Medicaid, and the Madness: A Third Update of the Continued Debacle

Seven weeks.

Seven weeks have passed since my power chair died, and it is still not fixed.

When my chair died, I encountered a conflict with Bellvue Healthcare (BHC), my medical supply company (MSC). Two months prior to my chair dying, I knew something was wrong with my chair. I took my chair into BHC; they informed me that it was time for new batteries. However, after not receiving new batteries for two months, my chair died. When my chair died, I found out that the problem was not actually the batteries, but the joy stick cable. I waited two months for batteries, just to find out that the batteries were not the issue. And, this was just the tip of the iceberg.

Two Fridays ago -- five weeks after my chair had died -- I received a call from BHC informing me that my chair would finally be ready to pick up the following Tuesday; I was so excited! I waited those four days with great anticipation, just to get a call saying that yes, my chair was ready to be picked up, BUT that the wrong joy stick had been delivered. I was told that I could use this joy stick until the correct one arrived, but that this loaner joy stick would solely turn on/off and drive my chair but would not operate the rest of the features on my chair. After waiting so long, I desperately desired to instantly go pick up my chair. However, after seeking council, my mind had been swayed, as I had determined that I needed to continue waiting to pick up my chair.

Here's the thing, if I picked up my chair with the wrong joy stick, BHC would no longer be obligated to do anything; they would have "fixed" my chair, and that would be that; I would never receive the correct joy stick, and I would be stuck with the one that was sent instead.

When the joy stick was ordered, someone made a mistake; either BHC filled out the order form incorrectly, or the distribution company misread the order form and sent the wrong joy stick. I will never know who made this mistake, and I do not need to know. All I want is for whoever made this mistake to fix the problem in a timely manner.

Another week has passed since the disappointing phone call. I have waited almost four months for my power chair to be fixed -- two months for batteries, and then seven more weeks for the joy stick -- and it will probably be another two to five weeks until the correct joy stick arrives. Until then, I will be waiting for my freedom to be returned to me, but still living my life, everyday.

Wednesday, June 8, 2016

Me Before Youthanasia: Why Me Before You is Not Just Any Romance Story

Am I a burden on society?

Is my life worth living?

Does my life really matter?

These are questions that have crossed my mind from time to time, but are questions on which I do not constantly dwell; however, they have recently surfaced from the recesses of my brain, and I have again addressed them, not because I am depressed, nor because I do not wholeheartedly know the answers, but because I have been recently reminded of how society views "my" life, and the topic of disability and euthanasia.

There is this perception that people with disabilities are better off dead. This idea is perpetuated by misconceptions, due to a lack of education, of what it is actually like to live with a disability. So, I am writing to share with you my perception of living with a disability. 

I use a wheelchair for mobility and need someone help me achieve my everyday tasks. However, using a wheelchair and needing assistance do not define my entire life. There are so many more things that make me, me. I am not just a disability, I am Kyann. I do not view my life as any more-- or any less--important than any other person's life. However, this viewpoint may not be shared by outsiders looking in.

I have been told by random people that they would rather die than live my life. Some may have a good intent behind sharing this information with me (as they are inspired by me simply living my life); however, this perception can be interpreted as my life is not worth living, and that I am better off dead than disabled. Is this comment really appropriate? I mean, sure, my life can be difficult at times, I am not going to deny that, but who's life is not? I have witnessed many people go through rough situations, and even though I may not have envied them, never did I view their trial as worse than death. Their life--and every life -- is sacred and worth living.

This idea of "better off dead than disabled" is driven by misconceptions broadcasted to the world by the media. Movies are greatly influential (even when they are fictional). Hollywood is sorely lacking in movies that represent the diversity within the disabled community. There are documentaries (not necessarily produced by Hollywood, but still a part of media) about people with disabilities; however, they are poorly circulated, and many push the pity agenda while portraying the disabled as inspirational heroes. I have never watched a movie where a disabled person was the main character, who was played by a disabled actor, that did not end with the disabled character choosing to end their life. Just once, I would love to watch a mainstream movie, that portrays a disabled character in a positive and accurate light.

Whose Life is it AnywayMillion Dollar Baby, and now Me Before You, all perpetuate the perception that it is better to be dead than disabled. These movies flaunt the perception that disability is a burden, but ironically these movies are actully burdening the disabled. It is important for people to understand it is the social stigma that stands in the way and hinders people with disabilities. If the world views the lives of the disabled as so horrible--beyond worth living--then there is no reason to provide equal access and opportunity to the disabled population; since disability eliminates the quality of life, the disabled would rather die than have access to enjoy life. On the contrary, overall, my quality of life has not been diminished nor eliminated due to my disability. If anything, my quality of life has been most affected by a lack of access and the misinformed perception of people with disabilities.

One of the problems with Me Before You is that there are not movies with which to make a comparison. This story is just one person's opinion, and I am not opposed to someone sharing their opinion; however, when there is nothing with which to cross check an opinion, and people are poorly educated on the topic of the opinion (in this case life with a disability), the opinion can be misinterpreted as fact. And, with regards to Me Before You, it is especially important to understand that the author, Jojo Moyes, did not do her research. This story does not interpret how life with a disability is really like. For one, misusing/making up medical terminology is not acceptable (as this information is readily available), and even more importantly, not every person with a disability desires to die.

When Will Trayner follows through with his decision to end his life at the end of Me Before You, he may have ended his physical pain and suffering, but at the same time, he ultimately legitimized the perception that life with a disability is a horrid reality. Disability is not typically the horrid reality that Hollywood portrays; it is not the disability that is the hindrance, but rather the mindset of society.

In contrast, throughout the storyline, Trayner encourages Louisa Clark (his caregiver), to better herself and to live boldly. Clark, who had been gang-raped as a teen, struggles immensely with her emotional pain and suffering. Both these life experiences are physically and emotionally scarring, both need healing; but who has the right to say one should live and the other should die?

Me Before You is not just another romance story; it impacts my reality, my everyday life. Here's the deal, anyone--disabled or not--could be depressed and feel unworthy of living. However, when people who do not have a disability have the overwhelming desire to end their own life, there are suicide hotlines, psychologists, and psychotherapists ready to help and access to medications; and if a person does lose their battle to depression, it is a tragedy.

However, if a person with a disability desires to die, it is considered a dignified act; there are not preventative steps, there are just "helping" hands to guide the disabled person on their way. And, when the disabled person slips away, there may be sadness, but it is not considered a tragic event, as the disability was the "tragedy".

So, am I really better off dead than disabled?

I am totally in disagreement with the message being portrayed in the storyline of Me Before You! Poorly researched information creates a misperception of what it is like to live with a disability. I may get frustrated due to the ignorance of uninformed people, and from not having equal access to buildings or job opportunities; and yes I do experience pain, but I love my life and I intend to live it to the fullest.

So, no! The answer is I am NOT better off dead than disabled.